I can’t count the amount of times I’ve heard those words. It seems like daily I have to explain to someone about the disease, which really isn’t that big of a deal as I pretty much have the whole explanation down. But I have had a wide variety of responses, some of which have been surprising including making a grown man who is the husband of one of my elementary teachers break down into tears.

The one response I keep getting though regardless of whether the person reacts in a sympathetic or supportive way, is “I think you are handling this really well.” My own mother has said that she is taking this worse than I am and gets more upset over it. With so many people telling me that I’m taking it really well it made me think, how am I supposed to be taking it?

I would never wish this disease on anyone. I’ve had days and nights that I’ve been so down that I haven’t wanted to leave my room because my hair was falling out in clumps and thought it was the very noticeable. I can’t imagine what it’s like to be a woman and lose hair like that (all the lovely ladies on score mad points in my book haha). But then I realized that by sitting there and thinking about the disease over and over didn’t help anything.

When you have something like this it doesn’t only affect your appearance it affects your whole life. It makes you who you are, and I didn’t want to be someone who sat there and felt sorry for myself, even if that is how most people would think I would react. You need to take the bull by the horns and take back control. Show people that you are a strong person and can still live a normal life even with a disease like this. If you do you will find that people will not only respect you more but some will even look up to you and admire you. That is the way I have decided to live and am happy with the results.

I know many people say that appearance isn’t that important. I would have been one of those people that said that, but I never fully understood what that meant until I triggered this disease and met all the people on here that continue to show that not only that bald is beautiful, but how beautiful someone can be when they have a disease that attacks their appearance and self image. I can honestly understand with this disease how some can hate themselves and become depressed by this. But I would hope that you look to the people on here that have made the disease a minor part of their life as inspiration and will someday realize that you live with the disease, you don’t live the disease.

As for what’s new in my life, not a whole lot. I went to my final dermatologist appointment. I didn’t expect it to be, but when the doctor finally got into the room I decided that I was done with the injections and she said she didn’t blame me. I may start treatments again in the fall, but I want the summer off to enjoy it and not worry about pits in my head or having to work around appointments.

I’m still going to the acupuncturist, in fact today I just started a new treatment there. It’s called the “7-Star Hammer” or the “Plum Blossom” which is a very nice way of saying a little plastic hammer with 7 needles on the end of it that I use on the scalp. It’s supposed to bring blood to the surface and nourish the hair follicles. I wouldn’t recommend it to anyone yet until I see results because it is painful, but I am willing to try new things.

Been busy with work because it’s summer and that’s when we’re the busiest. Filled in for the boss on Father’s day so he didn’t have to work and have been training a new employee. Last few days I finally got a couple days off in a row though so it’s been nice. Still coaching, it’s going well. The kids have taken my bald head well which is surprising because kids can be the most brutally honest. The best quote I heard was “You should be Dr. Evil for Halloween!” so I’m thinking about that. Other than that they just said I need to get out in the sun because it’s white still and needs some color.

For everyone going to the conference I wish you safe travels and that you have fun. I’m going to start saving up for next year as this year I learned about it too late. Hopefully I will be able to meet someone in person who has this disease because right now I don’t know anyone, which makes it hard at times, but this community really helps. So enjoy your time, and I hope you find some answers and the support you need.

-Drew